Information for people with, or parents/guardians of children with CF

Do I/does my child have to participate?

Your participation (or your child’s) in the CFRI is entirely voluntary. Whether you choose (to allow your child) to be part of the CFRI or not, your (child’s) care will not be affected in any way.

How can I (my child) take part?

If you (and your child) decide to take part in CFRI, please ask your CF care team for further information. You will be given a Patient Information Booklet and will have the opportunity to ask questions before you (and your child) are invited to sign an Informed Consent form. For further information, email info@cfri.ie.

Can I withdraw (my child) if I change my mind?

You are free to revoke your consent and withdraw (your child) from the registry at any time without giving a reason and without this affecting your (or your child’s) future medical care. We will process your withdrawal upon receipt of your written instruction.

If you wish to withdraw you should email info@cfri.ie or post your written instruction to:- CFRI, Woodview House, UCD Belfield, D04 V1W8.